Category: Life Lessons

“You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.” ― Anne Lamott, Bird by Bird: Some Instructions on Writing and Life

Short answer: No. No I’m not.

Reasons I almost didn’t write this:

Because of a pathological and unwanted sense of obligation to protect others’ public image, especially if it involved abusive and/or shameful behaviour, even more so if it was directed specifically at me. Because of decades of being made to feel that it was never their behaviour that was shameful but rather my speaking about it that was the problem. Because of decades of spiritual abuse that, also, mostly condemned those who spoke about wrongdoings instead of the wrong behaviours themselves. Because I was programmed to have emotional loyalty to people no matter how they acted or treated me. Because old habits die hard.

Reasons I absolutely AM writing this:

Because the very act of publishing this is an act of healing. Because the God I actually believe in supports those who speak the truth, not accuses them of being “unspiritual” if their truths make others uncomfortable. And because I can assure myself that no names or identifying characteristics will be mentioned, nor are they even remotely likely to ever read this.

So here’s something I’m actually excited to write about… Last month, or maybe the month before, I’m not sure but right before I returned to social media because I had healed enough to start responding to messages and e-mails once again… Some time ago, I faced my very worst fears in social media and relationships:

Someone not only misunderstood me, but thought the very worst of me, used my benign actions to justify their irrational belief that I was of ‘bad character,’ insinuated that I was being selfish with my time, and looked at things I’d written or shared on social media with an authentic energy and interpreted it instead as directly passive aggressive or malicious against them. Then they said what they thought they needed to say (I’m being generous, here), and blocked me everywhere, before getting to see the physical proof that they were actually 10000% wrong in their assumptions. Not a single conversation about what had been bothering them. Just accusation, character assassination, gone.

They took some of my worst fears, (1) that someone would use my words against me, (2) that I should never speak because people will just misinterpret it to mean something completely different and probably malevolent, (3) that someone would stalk things I did or said on social media to concoct a narrative in which they assume the worst of me, (4) that someone would guilt-trip me over the time I needed for self-care and (5) respond to it with accusations of selfishness and/or view it as an ill-conceived personal attack on them, and (6) that any or all of it would be used to justify abuse, character assassination, and/or emotional abandonment, and rolled it alllll into one. big. grand. gesture.

And guess what. I immediately recognized that it was completely unjustified.

I refused to accept blame for things I hadn’t done, because I knew none of it was true.

I didn’t go into hours, weeks, or months of self-abuse thinking I possibly deserved any of it.

And I survived.

Not only did I survive, but I even assertively stood up for myself (before they bailed, at least).

And, as a bonus, I didn’t move to contempt. Hurt over being thought of in such a way by someone I’d started to trust, yes; anger at being mistreated (a good sign for someone who’d always been punished for expressing anger), yes; disappointment and confusion, yes. But not contempt, not hatred, not a sudden need for self-protection by going on the offense, and no thoughts of “what a terrible person you are for doing all this.” They’re not. I know why they did what they did even if they don’t understand it, themselves. I’ve been a version of them in my past, believe it or not, when I didn’t know the true depths of my mental illness. And because I have compassion for the situations in my life that caused me to behave irrationally with others, I can have compassion for the situations in their life which caused them to do this. (Plus I lived with an infection for 7 years that reliably turned my brain chemistry upside down every 5-6 days. But anyway.)

As Elizabeth Gilbert wrote in Big Magic, about a woman who’d read her book and imagined a narrative within it that wasn’t actually written: “Their reaction doesn’t belong to you.” I’m only responsible for what I put out, not how it passes through others’ personal filters, for better or worse. I know now that I don’t have to allow those “worst fears” to have power over me anymore, because I know I will not only survive should it happen again, but that I have healed so much in at least this area, that I won’t be sent into a spiral of self-loathing, automatically assuming I deserved it. I can’t even explain the pit “old me” would’ve had to crawl out of in the past, the way it would’ve stirred up abandonment depression and sincere beliefs of “maybe I am everything they think.”

I’m making tremendous progress this year.

This isn’t even counting what happened at the beginning of the year, when I warned people about someone who had copied and posted my work but changed the words around to reflect their own story and history. Instead of any “thanks for letting us know,” and despite me sending them the link to my piece, I was met mostly with people incredulously claiming it wasn’t mine, and how dare I say such things. Ha! So part of my path this year seems to be learning to not be affected by blame or praise. But especially the blame.

“How equanimous are you when people express their views of liking or not liking what you do? Do you take it personally or understand they are simply expressing their own bias? Does praise or blame disturb your balance?”¹ “As the Buddha said, pleasure and pain, gain and loss, praise and blame, fame and disrepute constantly arise and pass away, beyond our control.” He said, “There is always blame in this world. If you say too much, some people will blame you. If you say a little bit, some people will blame you. If you say nothing at all, some people will blame you.”²

I think I’m doing pretty good so far. Don’t you think?

On second thought, don’t respond to that.

I cannot live my life letting fear of what someone might misinterpret decide what I do or don’t do, what I say or don’t say, what I share or don’t share. I’ve lived most of my life walking on eggshells for everyone else, and I’ll be damned if I’m going to spend the remainder of my life doing it, too.

Even now as I write and edit, I feel fear over what others will think about this. Maybe that won’t ever go away. But it doesn’t have to: I’m going to write, speak, share, and live, regardless.

I’m happy about all the progress I’ve made, even if it took something painful to help me realize it.

Takeaways for others, I hope:

I didn’t include this part of things, but make sure you’re not accusing someone of something that may actually be partly or entirely due to a technological glitch.

Don’t take your thoughts so seriously. Some meditation practices help us contemplate situations from the perspective of, “Do I really know this is what’s happening?” Much of the time, we truly don’t. This can help us find that place of spaciousness from which we can choose to respond instead of react out of past hurts or abuse.

If you have mental illness, try to remember your sick brain may colour your perspective of what’s going on. Although not everyone has the luxury of being able to find that spaciousness, not even myself, at all times; the key word is “try.”

Likewise, remember if someone has a disease affecting their brain, there’s very little chance it won’t also affect their thoughts, as well as the way they process information. Have compassion.

Above all, remember everyone is doing the best they can with what they have to work with, and for goodness sake, try to think the best of each other.

I’m not used to living this kind of life. It’s so different from what I was supposed to have.

I barely see anyone. I barely go anywhere. I have no local friends and I think I’ve permanently lost my ability to drive. Disease puts me in bed an average of 23 hours per day, or at least to somewhere I can lean back and my legs are propped up to ensure proper circulation. When you tell people these things, they immediately pity you and interpret it as a bad kind of life, or a sad kind of life. “Oh you poor thing…” But I feel neither sad nor pitiful. And if you knew how much worse things actually could have been, you’d understand that only 23 hours in bed is a fucking miracle.

What I actually feel is peace, and I’m content and I’m happy and this fact truly boggles my mind.

This isn’t complacency. I know intimately the “lurking dangers” of this life and never have my head in the clouds–it’s not my style. Just last month I tried an herb that had once helped me for seven years; it failed. The month before I temporarily stopped a medicine I was on to see if it really makes a difference; it does. Two weeks ago I upped another med because one of my symptoms has worsened. And I’m only narrowly avoiding having to start a new neuropathy medication. Meanwhile, with much help I’ve planted spider lilies and a peach tree as investments in the future, bought a chaise lounge for my back porch so I can be outside more, have written and advocated a lot (obviously), put new wind-chimes directly outside my bedroom window, made reservations for a four-day beach vacation with my family next month before it gets too hot, because four days means at least one of those days I’ll be able to actually see the beach…

And I also have neurologist, immunologist, pain management, primary care, and endocrinologist appointments, although I struggle immensely with getting to them. As well as four semi-important blood tests to do that will probably never actually get done because I’m sorry, it is just not possible that someone as ill as myself can awaken and get up four hours earlier than usual without any caffeine, any pain medication, or any food, while having autonomic neuropathy, suicide-levels of pain, and pre-diabetes thanks to polycystic ovarian syndrome…

No, I’m not complacent.

There’s no wool over my eyes so that I can smile in the opposite direction. I’ve spent enough of my time in emergency rooms and hospitals and grieving the deaths of others from my same diseases that a bubble of blind optimism offers me no protection. Nor have I given my resignation to life, although I know I’ve exhausted my treatment options. Even if this was as good as it ever got, I’ve done enough living for many lifetimes, I think. And when the theatre season picks up next month I do have plans to go and to see. There’s a choir, another chamber orchestra, another beach, another ballet, all evenly spaced so that I’ll have time to rest then go then rest again to ensure my attendance at the next.

But for the past four months I’ve been what can only be described as a recluse, and I am so perfectly fine with it, that my peaceful surrender actually gave me pause. I had to stop and make sure nothing was wrong with me, that I wasn’t secretly anxious or scared or complacent or depressed or suffering a lack of motivation, because in my naiveté I thought those were the only reasons anyone could be in their own company for as long as I have and not crave “more.” As it turns out, my definition of “more” has changed dramatically, and being peaceful this consistently just isn’t something I’m used to, so I’ll sit with it for a while until I understand it fully, like Buddha under the Bodhi tree.

Most of my life has been spent in some form of chaos. Even growing up, I had no idea what it meant to relax, although ironically I never put it together that such a hellish environment was the very definition of stress, because that fact was so vehemently denied by the chaos-makers in favor of the illusion of happiness. It occurred to me later in life that this may be why I only accept authenticity and facing life head-on: I know what it feels like to be surrounded by fake emotions and others’ delusions instead of reality, and I never, ever want to live that way again. Life is much less frightening when you face it, trust me. There is safety in the truth.

Even though this is the kind of life that most would consider boring–especially my fellow Americans–I am so happy, and my quiet existence fills me with such joy. After living chaotically for such a long time, there’s now a sweet comfort in my predictable routines, an intense pleasure to be found in what most call mundane. The paradox is that I’m faced with allowing myself this happiness.

Confronted with better alternatives to old toxic patterns, there’s a bridge I must cross every time solutions seem too easy, too good to be true. I used to feel guilty for feeling calm amongst awful situations that were tearing other people apart, situations that in fact used to tear me apart, also. You think I just woke up like this one day? Oh, definitely not.

I still remember where I was the first time I noticed everyone around me was crumbling under a crisis, yet I, instead, was overcome with internal peace, finally aware that I could still not only feel calm, but I could actually be the calm, even as I acknowledged the situation’s dark potential. The difficult part was no longer finding that quiet internal space, but allowing myself to be as okay as I sincerely felt, and understanding it didn’t mean I was any less concerned than everyone else. Unfortunately, that’s how everyone else interpreted it even as I openly expressed otherwise, but you can’t please everyone.

I’m learning to be okay with this type of stability.

People do everything they do because they want to be happy, feel safe, have an impact on the world around them, and live in harmony. I used to think there was only one way for me to get there.

“Education is an admirable thing, but it is well to remember from time to time that nothing that is worth knowing can be taught.” (Oscar Wilde)

So how do you respond when someone looks at something you’ve worked your ass off for and thinks you only got it because the odds just fell into your favor? How do you process this inherent invalidation of all your struggles, and what does it mean about the person who said it?

When I look back at all that I’ve done over the past year, it really blows my mind. And I did it all because I first made the choice to live and enjoy within the confines of my circumstances, just like I did last year. I set in my mind what I wanted, made whatever arrangements I could on my own to help them manifest, and let the Universe work out the rest based on what I needed to experience.

If I wasn’t supposed to have something yet (or at all), well it wouldn’t have been from my lack of trying.

None of it would have happened if I just blindly accepted the identity of “sick person” that most family members and even doctors wanted to give me; that for too many years I gave to myself, as well. With this identity comes the belief that you must wait until you’re better before you can enjoy your life, whereas nothing could be further from the truth, especially when it comes to long-term or chronic illness.

But in general people don’t want to hear that. Some don’t even want to hear about all that I was able to experience (although I’ve already written about my past endeavors-while-sick), and that’s okay. I know the things I lived, I don’t need further documentation. And because it involved a lot of travel, I don’t imagine they’d be all that interesting to anyone else, anyway, in the same way slide shows of your vacations need to be ambushed upon unsuspecting house guests if you plan to share them.

I might be a little biased on this next part, due to people continuously asking my advice on how to get something I have (emotional freedom and the like, usually), yet being very unwilling to actually do anything that’s even mildly uncomfortable in order to get it. Then they turn around and play this card:

They wish something in their life was as “easy” as I “seem to have it.”

More than a few people have said that to me within a week’s time, and I couldn’t help but laugh.

Because nothing–absolutely nothing–has come easy for me. No one comes to acquire the traits that make life’s difficulties seem “easy,” because life actually WAS easy. No, they arise from having had so much hardship that you eventually learned coping mechanisms to deal with them. Even still, what one might perceive as my ease of living is actually my choice to experience it as such, and I’ve crossed over mountains to get to this place from where I was, because I was not raised to be peaceful. (Please read that. Okay?)

But people only hear what they want to hear, and until they’re ready to change, they resort to, Of course YOU did it, you [insert excuse for why it’s easier for everyone else besides them]. Or else they want to be spoon-fed the exact steps they need to take, as to (1) only do and invest as much work as is necessary and (2) eliminate the natural consequence of following less-strictly-defined steps: fear and anxiety.

This “Of Course It’s Easy For You” Syndrome is also troubling because it’s an unconscious confession of (more fear) self-sabotage. This is inventing excuses for why you can’t have what someone else has, to convince yourself not to even try. It’s giving yourself an “out” based on an external factor out of your control, or something internal you perceive yourself not to have but which someone else does, helping substantiate your belief that the situation is out of your hands.

But if you want things to be easier, it doesn’t start with changing your circumstances, because you can only manipulate your circumstances to the extent that you realize what is really yours to control.

And that all starts with manipulating you.

Society tells us from the day we step outside that your life is supposed to be about getting from point A to point B, and to pass your days filling in the rest with your to-do list of how to accomplish that. But that’s incorrect. Our lives aren’t defined by only the big decisions, goals, and occurrences. However much impact they have on the rest of our days, those major game-changers are few and far between.

Life is mostly made up of all the little moments you encounter between those perceived checkpoints. It’s all the smaller things you do day in, and day out, that make up the most of your life and help determine your happiness. You can have a radically different life without changing a single external circumstance, because the only common denominator in your entire existence, is You. In other words:

When it comes to enjoying your life and finding peace, it has nothing to do with someone else having something you don’t.

And I guess that’s why it doesn’t matter too much to me anymore to explain all that I’ve been able to do, even while sick. Although reaching those goals was inexplicably amazing, it’s the process of living and thinking that helped me manifest them at all, which holds the most value in the long run. And that’s the part I really want to share with this blog.

I make sure they take their medicine on time and I’ve helped them figure out what’s actually helpful so they won’t have to take any more than necessary. I’ve helped them find interesting pill cases to take off the mental stress of staring at a dozen pill bottles always by their bed, which I know they have to reach for multiple times a day. I listen to the extensive list of doctors everyone wants them to see, and help them figure out which appointments are really important and suggest they prioritize those above the rest. I’ve called and written for them so they can get any procedure possible done from home, so they won’t have to deal with the physical exhaustion of leaving the house “just” for uncomfortable treatments, or the mental burden of being surrounded by a medical establishment that has traumatized them over the years.

I’ve helped them find clothes that were of soft fabric to help with neuropathy; helped strategize their budget to find money for important purchases that make their life easier, like an overbed desk, a smartphone to stay connected to friends that only exist outside their city, and a stereo that uses bluetooth so they can listen to anything instantly using their phone as the remote. I’ve introduced them to mindfulness and stressed how important it is to take care of their inner world, almost more so than their outer body, because they can’t always control their circumstances, their disease, or natural physical changes, but they can always decide how to think about them.

I’ve helped them make extremely difficult decisions about their treatment and supported them endlessly in whatever they had to choose, trusting that only they know what’s right for them, and that no matter what, it will be the best for them and subsequently everyone around them, including me. I’ve shared with them any and all of my collective wisdom to help make their travels on this earth a little easier, hopefully none more difficult than they must be. And I’ve done all this and more because I love them and want their life to be the best possible. I’m already so proud of them, for things sometimes I wonder if they even realize.

I’m proud of them for getting out of bed whenever they have the option. I’m proud of them for not giving up on life after it turned out so drastically different from their plans. I’m proud of them for continuing to try new things whenever they have the capacity, and for acknowledging, accepting, and loving themselves whenever they DON’T have it. I’m proud of them for taking care of their body even though that can be a full-time job in itself, and they’re disabled. I’m proud of them for continuing to do the things they love, even though they had to learn to participate in new ways; I think that’s so amazing. I’m proud of them for reaching out to others even when not many reached out to them. And I’m very proud of them for letting go of the ones who never reached out to them, because I’ve seen that it left them more energy to spend on the people who truly cherish them. I’m proud of them for not settling for anything less than authenticity.

And once the time comes–because it will–for them to move forward to the next phase of their existence? Don’t be fooled by the media or even friends and family: They’re not losing any battle against disease. They’ll simply be finished here.

To paraphrase Eckhart Tolle: You don’t “have” a life, you ARE life. They are Life. I am Life. You are Life Itself, and you cannot lose something that you are. And the friend I mentioned, is myself.

After spending a week considering a one month break from Twitter (and other social media outlets), I “stumbled across” something I wrote two years ago on my personal blog when I first tried this. (I say “I stumbled upon,” but I do not believe in coincidence.) Almost exactly like now, I had just relapsed (the one that necessitated I stop treatment) and found myself needing to prioritize my energy in order to adapt to my new normal. I’m posting it here partially as a testament to my growth, partially to explain my current social media absence using words I’ve already written (no spoons!), and partially that others might identify with any of the struggles I had back then. But trust me, this is NOT an anti-technology rant!

Tuesday, 18th December, 2012

I feel a need to be more free in my writing and not always have it dictated by a clear “purpose.” I mean, obviously there is always an intent, but this All or Nothing mindset that has still somehow managed to stick onto my creative expressions is getting me no where.

I fear having a bunch of unfinished projects because in my brain I’ve associated that with something “bad.” It’s “bad” to not finish things, and it’s “bad” to start something new before you finish what you’ve already begun. And perhaps for many things, even most things, that’s true. How will you see what you can do if you don’t see anything through? But this isn’t a major life decision–it’s expression. The All or Nothing mindset was drilled into me since I was a child, but it’s time to evaluate why I think the way I think. Do I really feel that way, or do I think that because someone taught it to me and I never stopped to question it, question them? No, I get to choose which rules I live by, which ones will serve me, and my common sense says there are exceptions to everything.

If there is an option between writing nothing because you cannot write everything, or writing a little even if it might take a while to make sense… I don’t want my brain to implode from a lack of expression.

“I used to believe that time was the most important thing I have, but I’ve come to believe differently. The single most valuable resource I have is uninterrupted thought.”

“I’ve realized how Twitter has made me break up my thoughts into tiny, incomplete, pieces-lots of hanging ideas, lots of incomplete relationships, punctuated by all manner of hanging threads and half-forked paths. I am perfectly fine with unfinished work-in fact, I doubt I’ll ever be a better finisher than I am a starter. But I’ve found that my greatest joy, deepest peace, and most valuable contributions come from intentionally choosing where to let my focus rest.”

After reading the potential for this social networking site to do that to one’s psyche, combined with the fact that I’d recently been putting thought into what purpose Twitter served me (something I feel is important to do from time to time; weed out what doesn’t bring you where you want to go), I had to try it for myself.

It’s barely been two weeks since I told everyone on Twitter I’d be leaving until the new year, and I haven’t tweeted since…save the automated ones that post from my health blog. I have logged in occasionally to see if there were any mentions or replies, but no. Is that unusual for someone with almost 200 followers that are otherwise pretty chatty?

One major part of Adam’s Twitter ramble was how much he CARED, and how the site was draining him emotionally because he couldn’t really do anything about the bits of information that were posted. I can thoroughly relate to this because my main use of Twitter was participating in the support system us “spoonies” formed. There are lots of tweets about suffering. (It was easier to release the thought there, where people at least understood, instead of “bothering” friends or making Facebook posts.) So sure, he wanted to do something for people, but–much like myself–he liked to show sincere care and do something real to help, and how can you do that for the hundreds of little tidbits posted? Truly, they leave more questions than anything. “Twitter is outsourced schizophrenia.”

And one major facet of people like us, the “carers,” is that.. we care a whole hell of a lot more than most, meaning we get close to people and form connections with them easier than most. This is never clearer to me than when I leave behind any social networking platform I’ve ever used: I want to take people with me, but they don’t care where I go. I want to keep in communication with those I’ve formed bonds with so I leave e-mail addresses or new account locations, but they never contact me again.

And it is what it is, truly. I realize people are meant to come in and out of others’ lives. But the fact is I end up caring about others far more than they care about me, which–in Twitterland, especially–means I extend energy toward irreconcilable situations and incomplete relationships. This is not something that is conducive to what I want, need, and am entitled to as a human being. (Maybe, too, I’m just from a different time, before the internet when people called and wrote and relationships weren’t so throw-away.)

And my thoughts, it’s like they all had their potential to become something, but the goal really did become fitting them into character limits instead of expanding them. It filled the temporary niche for an expressed thought, but then it died there. Did I explore any introspection or make blog posts when I was on Twitter? No. (Of course there were other reasons I haven’t been blogging on this account, but.) It’s honestly kind of amazing, when you think about it.

I do miss Twitter, though, for when I REALLY DO have tiny incomplete thoughts. I must have been using it wrong, something it wasn’t designed for, at least not for people like me who are creatures of many words. So I call this experiment a success! More useful knowledge to bring with me into the new year. I was never a Twitter addict, but when I return to it next year, I will not be checking it as much, I will know my limits when I start to become irrationally emotionally invested, and I will be more mindful to use it in a way that adds to my life.

I thought I had been doing that, but when I started to delete people, I felt like I was doing something wrong. I felt guilty pruning through the lists of users to leave only the ones that inspired me to be greater–a thought that, when I type it, seems absurd! As Adam wrote,

“Ultimately, I still *like* a lot of those people and like much of what they have to say. I don’t believe that restricting the people I follow to only the ones I agree with 1000% of the time is healthy.”

But if I cannot find a way to keep balance with it, it has to go until I can do so. As I always say, if you’re not going to use social media for what you want out of it, why is it in your life?

I knew the Universe had something to show me when it brought that article to me right when I was contemplating my relationship with Twitter. As Oprah would say it, I have learned to listen to the whispers before the bricks start flying!

I remember how well that one month break ultimately worked for me the last time, and reading this old post solidified my decision to do it again. I laughed at how, even in my old entry, I mentioned Adam’s post appearing right as I was contemplating a break. This time, my own old post came to me! The Universe always sends us what we need, if we pay attention. With my newly-limited energy, I need to focus. I don’t have spare energy to do it all anymore. The situation has changed, and I must change with it.

If it’s not bringing you where you want to be, let it go. “Let go or be dragged.”